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Facilitated communication, autism and patients’ rights

This past April 2, on World Autism Awareness Day, Apple released a heartstrings-tugging commercial depicting an autistic boy typing, in part with the assistance of a facilitator, a message on an iPad that voiced: “So many people can’t understand that I have a mind. All they see is a person who is not in control. But now you can hear me. The iPad helps me to see not only my words, but to hold onto my thoughts.”

The commercial was surprising because this system of “facilitated communication” (FC) was thoroughly discredited in the 1990s. Facilitators had used plastic alphabet keyboards or portable typing devices, and in various videos—for example, the 1993 Frontline episode “Prisoners of Silence”— you see children who are not even looking at the keyboard as facilitators direct their typing or facilitators moving the keyboard under a child’s hand to produce the proper keystrokes. The technique was an academic curiosity until FC-generated messages included graphic descriptions of sexual abuse by families or caretakers of numerous children. Charges and lawsuits were filed, and courts needed scientists to determine who authored the accusations—the children or the facilitators?

Howard Shane, now director of the Autism Language Program at Boston Children’s Hospital, and Doug Wheeler, then at the O. D. Heck Developmental Center in Schenectady, N.Y., conducted independent controlled experiments in which autistic children and their facilitators were shown pictures of either the same or different objects while blinded to what each other saw. What was typed was always and only what the facilitator saw. (continue reading…)

Charlie Sheen’s misadventure with a false cure for HIV/AIDS

When basketball legend Magic Johnson announced in 1991 that he had tested positive for HIV, it was a death sentence, and he promptly retired from the Los Angeles Lakers. Fans mourned his coming demise, but to everyone’s astonishment, Magic’s life continued in relative normalcy. A quarter of a century later he is an active entrepreneur, business leader, philanthropist and advocate for HIV/AIDS prevention.

Magic’s story is emblematic of one of the great medical achievements of our time. Although there is still no cure or vaccine for HIV, teams of medical researchers have developed a highly active antiretroviral therapy (the HAART “cocktail”) that significantly slows the progression of the disease by reducing the viral load to an undetectable level. If treatment is started promptly after early detection in young adults, for example, life expectancy returns close to normal.

Perhaps this is why there was far less media frenzy and social mourning after the November 2015 announcement by actor Charlie Sheen that he was HIVpositive. Most assumed HAART would save Sheen’s life, not his “tiger blood” and “Adonis DNA” that he boasted about during his highly publicized 2011 meltdown following his dismissal from the hit TV series Two and a Half Men. (continue reading…)

Discerning science from pseudoscience

Newton was wrong. Einstein was wrong. Black holes do not exist. The big bang never happened. Dark energy and dark matter are unsubstantiated conjectures. Stars are electrically charged plasma masses. Venus was once a comet. The massive Valles Marineris canyon on Mars was carved out in a few minutes by a giant electric arc sweeping across the Red Planet. The “thunderbolt” icons found in ancient art and petroglyphs are not the iconography of imagined gods but realistic representations of spectacular electrical activity in space.

These are just a few of the things I learned at the Electric Universe conference (EU2015) in June in Phoenix. The Electric Universe community is a loose confederation of people who, according to the host organization’s website, believe that “a new way of seeing the physical universe is emerging. The new vantage point emphasizes the role of electricity in space and shows the negligible contribution of gravity in cosmic events.” This includes everything from comets, moons and planets to stars, galaxies and galactic clusters. (continue reading…)

How trustworthy are DNA and other crime scene tests?

The criminal justice system has a problem, and its name is forensics. This was the message I heard at the Forensic Science Research Evaluation Workshop held May 26–27 at the AAAS headquarters in Washington, D.C. I spoke about pseudoscience but then listened in dismay at how the many fields in the forensic sciences that I assumed were reliable (DNA, fingerprints, and so on) in fact employ unreliable or untested techniques and show inconsistencies between evaluators of evidence.

The conference was organized in response to a 2009 publication by the National Research Council entitled Strengthening Forensic Science in the United States: A Path Forward, which the U.S. Congress commissioned when it became clear that DNA was the only (barely) reliable forensic science. The report concluded that “the forensic science system, encompassing both research and practice, has serious problems that can only be addressed by a national commitment to overhaul the current structure that supports the forensic science community in this country.” Among the areas determined to be flawed and in need of more research are: accuracy and error rates of forensic analyses, sources of potential bias and human error in interpretation by forensic experts, fingerprints, firearms examination, tool marks, bite marks, impressions (tires, footwear), bloodstain-pattern analysis, handwriting, hair, coatings (for example, paint), chemicals (including drugs), materials (including fibers), fluids, serology, and fire and explosive analysis. (continue reading…)

Can burn patients really be healed from a distance by phone?

A couple of weeks ago I was at a meeting with television producers at a Pasadena, California hotel when I ran into a man named Richard Greene whom I had met last year at the debate that Leonard Mlodinow and I did with Deepak Chopra and others at Chapman University. With him was a woman named Dr. Marja Pronk, whom Greene introduced as someone who can heal burn patients from a distance by phone, and that she learned this skill under the tutelage of one Dr. Philippe Sauvage. Greene was interested in having me test Dr. Pronk while she was in town, but we ran out of time and the protocols and ethical considerations of intentionally burning either people or animals were prohibitive (in my view) and so at present we are still working on how this claim might be tested under controlled conditions. If you have any suggestions on how we might do this while also meeting the ethical requirements of an Institutional Review Board or Ethical Review Board that overseas the ethical treatment of human and animal subjects in experiments, please let me know.

First, I will provide you the background I was provided followed by my own thoughts on what it would take to test such a claim, along with my thoughts in between on Philippe Sauvage, which as you shall see is making extraordinary claims that go far beyond healing burn patients.

Richard Greene sent me this background material:

As we discussed, the claims made by Breton “healer” Dr. Philippe Sauvage and his co-workers, including medical Dr. Marja Pronk (http://www.youtube.com/watch?v=sshO4IrvJzI and www.sosburn.info) are astounding and challenge almost every belief we have in Western science. To date there have been approximately 500 who have benefited from this technology in 29 countries (including 46 states in the US). Here, for example, is a video of 22 year old Chris Fleming from Ontario, CA. and some press clippings from Africa:

The protocol is, as we discussed, for those who receive 1st, 2nd, 3rd or 4th degree burns to simply call the designated free healing hotline within 30 minutes of the burn. As you will see in the videos, the claim, remarkably, is that 100% of those who do this have their pain removed and ALL skin damage reversed within hours or a few days at most. Here is the most dramatic example—a Ghanan girl that Dr. Marja Pronk treated using Dr. Sauvage’s method. Her burns, as you can see, were 3rd and 4th degree and she was expected to die…

Because her father made contact with Dr. Pronk’s team, this beautiful young girl made a full recovery. Here are the after photos. There were no grafts or other surgical procedures performed.

Mr. Greene did qualify his own observations:

I do not have direct experience of these examples or claims. What I do know is that Dr. Sauvage is one of the most intelligent, genuine and unique men I have ever met and that he looks at the world in a very different way. Based on my time with him and Dr. Pronk and Alison McDermott, the highly articulate nurse who coordinates the efforts here in the US, I (even the lawyer side of me) am highly inclined to believe that his healings are real and represent the most repeatable, verifiable and significant scientific breakthroughs in centuries, if not all history.

Thank you for keeping an open mind.

I found Mr. Greene to be a very intelligent and thoughtful man who genuinely believes that Sauvage can do what he claims. However, a little background search on Sauvage turned up some disturbing aspects to the man. For example, I noted that this doesn’t look too good.

I asked Mr. Greene if he believes these things that Sauvage claims about himself:

At the end of “Druidism,” there would be born a single male child [to] the only surviving matriarchal lineage of ancient Armorican spirituality. Androgynous, with the sacred powers of both female and male combined for the only time in Druidic history, this male child would be called the last Strobineller, the paradigmatic shiftmaster, assigned with the task of reconciling Man and Nature before humankind destroyed, forever, planet Earth, or vice versa. Born on December 30, 1953 in the Celtic nation now called Brittany, Philip Savage was this male child.

This, I noted, is the classic messiah complex, single male child of matriarchal lineage, healing the sick…come here to save mankind…he’s the new Jesus and Marja Pronk is his Mary Magdalene.

I asked Mr. Greene what he thought of all this, and he responded thoughtfully:

1) Dr. Pronk is 100% solid with impeccable integrity and the testimonials—as a professional in non-verbal communication and body language who gets as much as $25,000 per day to teach businesses same—are overwhelmingly solid and believable in my professional opinion.

2) I have spent about 30 hours—1 on 1—with Phillip and have experienced a level of knowledge, perspective and answers to questions that I have never experienced before. He is not normal and is, indeed, exceptional in every way—even in his eccentricities. How many con men do you know that speak 17 languages, play at least as many instruments and have 3 advanced degrees.

3) I have never seen anything to indicate that the medical cases are not 100% real.

4) I have never seen anything to indicate that the burn cases are not 100% real. As we discussed, Michael, he could be an alien, the worst human around or even a figment of one’s imagination…but if this shit works, it is a phenomenal story and one of the greatest medical breakthroughs in human history.

All of the above is irrelevant, though, Michael, as you know better than anyone. Let’s do the testing.

Fair enough. The proof is in the pudding. But I did write to Richard the following concerns that I have about Sauvage (sometimes rendered online as Savage):

I appreciate your frankness. I must tell you that the more I read about Philip Savage the louder my baloney detection alarm sounds. I’m sure you must understand why. Even in LaLa land here in So. California, with egos bigger than Mt. Everest and loonies claiming every nutty thing under the sun, Savage towers above them all in both audacity and unbelievability. My experience after three decades of investigating such claims is no one to date who has ever made such claims has turned out to be the real thing. Not one. Not even close. They are either delusional or psychopathic con artists. So…the chances of Savage being able to do what he claims, in my view, is extremely low, very improbable.

Still, as you say, the proof is in the pudding, so let’s put him to the test: not by advertising a phone number and hope people call with a burn accident; but by a controlled test in a laboratory under conditions that he (or Marja) could attempt to alter cells or heal them or whatever—some objective measurable effect that can be documented and recorded. The problem with subjective pain readings (on a 1-10 scale, for example), is that all sorts of things can effect it, including acupuncture, acupressure, meditation, just thinking about the pain scale, etc.

Please ask Marja if she can do something along the lines of altering cells or healing burns or injuries in a controlled setting such as a lab. I do not want to participate in a program that involves giving out a phone number because gullible people may naively start calling it in the belief that their cancer, AIDS, etc. will be cured, giving them false hopes, possibly draining their bank accounts (if such a thing is going on), etc. That would make me party to a scam and so I can’t take that risk. And in any case, as I said, that’s not an ideal test. We need controlled conditions in a lab or a hospital. I don’t see why, if burn pain is a product of the brain and thought, that Marja can’t go to the UCLA medical center and find someone who is in agony, and just heal them right there, reduce their pain level through her and Savage’s method. If you want a dramatic demonstration that could be filmed, that would certainly do it!

In a follow-up email I added:

More to the point, we need to establish some sort of definitive test in which we can clearly see results (or not). Remember, medical conditions are rarely stable—they are constantly changing, so we need to have in place a way to tell if the change is due to natural processes of the body healing itself, interventions by traditional medical treatments, or through Savage’s method. Anecdotes won’t help us. “I felt better after Dr. Pronk treated me” doesn’t mean anything. Maybe that patient feels better after a good night’s sleep, or after the doctor visits, or after taking his meds, etc. Most important is that we are very clear about what exactly is being claimed so that we can test that. Big generic things like “feeling better” or “getting better” won’t cut it in science. Specifics, such as burned skin healing 50% faster with the Pronk treatment versus the traditional medical treatment would be an example because then we’d have a time frame that can be quantified.

Then, out of the blue, I received an email from another Sauvage acolyte named Alison McDermott:

Through researching you, there seems to be pervading humanitarian integrity, a steadfast scientific mind who loves the simple truth of the matter, as well as a remarkably in common, “list of Loathsomes” with Dr Savage and myself. Religions, “New Age bozos” to coin his phrase, (these two top of the list), so-called “psychics”, “mystics”, most definitely “healers”, prophets, “goddesses”, fakirs, so-called “alternative practitioner’s” and all the other self-deluded of which you can find just about everywhere, busy claiming to do what they cannot do…. If I may presume some understanding of your “gurus”? Facts, solid proof, science and the scientific methodology. Also know as “The experiment”, and the findings thereof. (None of which you have ever found demonstrable by the list above throughout your 30 year investigative career, if I am correct?)

The “salt” of any good skeptic you’ll probably agree would be, “We want to see the diligent establishment of these “facts, results and proofs”, else expect, (quite rightly) to be “thrown to the lions”?? The skeptic with integrity that is, not the “dime a dozen”, wanna-be de-bunkers of subjective “mere opinions”, educated or otherwise, “ruin them without testing them”—“witch-hunt” tacticians (“paid for slander” as deployed by the BBC) etc etc, amateurs which are as “virally prolific” as are those on the list of deceivers above your mission is to “expose”.

Dr Savage can do what he claims…and can prove it to you.

There has long existed the perfect logistic to execute this “experiment” meeting all scientific standards required, not shared with you in any contact with Dr Marja Pronk and Richard Greene. Simply put, it is this:

This “right person” is PERSONALLY (friends) connected to a TV News Network DECISION MAKER, (CNN, FOX NEWS, APTV have journalists in every major city) who, with a simple phone call, can quietly and privately mobilise a posse of his journalists on location ALREADY, eg in major cities or war zones etc, to send in burn cases, and film the results. (they are called to fires, explosions, bombings all the time…their “runners” are on the scene in minutes.) Proofs start coming in…where upon, the “decision maker” now KNOWS it’s true!!! Then, he has ALL his worldwide journalists alerted to send in burns…and the start pouring in thick and fast, 100’s or more per day…

The “carrot” for this network decision maker is that they get to “break” the news AND the exclusive interview rights with the man behind the results…(ratings ratings ratings!!)

Would you agree that observable, repeatable and recordable results, documentable over and over by independent scientist’s/doctors around the world, nothing whatsoever to do with YOU or US, each other or any party involved, (except as an emergency admission burn victim to their ER) is as scientific and objective as it gets?

I am permitted to officially “throw down the gauntlet” directly on behalf of Dr Savage himself for you to…”Expose the famous Breton healer” scientifically, once and for all.

I responded:

Hi Alison, thanks for the thoughtful note.

There’s no gauntlet to throw down or anything like that. We’re just trying to figure out a way to test Dr. Savage’s and Dr. Pronk’s claims of being able to heal burn patients. The problem with what you suggest about getting journalists to call the number in the event of an accident or fire that results in burned people is that this would not be a controlled experiment. People vary greatly in their ability to heal from various disorders and there are dozens of reasons why. The hard part about doing science is isolating the variable that actually matters from the variables that do not, and then controlling all the variables for the placebo effect as well. Take age, for example. Older people heal much slower than younger people, from most diseases and accidents, so you have to control for age. That is, take age into account in a statistical analysis of group differences in whatever you are measuring. Socioeconomic status also matters, since poor people typically have poorer diets, exercise less, smoke and drink more, engage in riskier sex and do drugs more, have poorer health care, see doctors and dentists less often, and so on, and all these things also influence health and healing, so these too must be controlled for. And this is just the tip of the iceberg. Anecdotes about this or that person who got healed by Dr. Savage (or any one of hundreds of other alternative medical treatments available on the Internet and other alternative sources outside mainstream medicine) are completely meaningless from a scientific perspective because of the problem I’ve described above.

What needs to be done to properly test Dr. Savage and Dr. Pronk would be to, say, have a sample size of 75 people, all of whom are burned in precisely the same manner, with the same technique (e.g., cigarette burn), at the same temperature, in the same place on the body, etc., then treat 25 of them with Dr. Savage’s technique, 25 with standard medical treatment, and 25 get no treatment whatsoever. Then see if there are any measurable differences between the three groups. Studies such as this, which typically involve much larger sample sizes (usually in the hundreds or thousands) take many months—sometimes years—to complete. It can’t be done in one setting. That’s the only way to know if something works or not.

So, although I can certainly sense in your passion that you believe Dr. Savage can heal burn patients, there’s really only one way to know for sure and that is to conduct a test such as what I’ve outlined above (although there are others I could propose as well). But for both legal and ethical reasons that I’ve communicated to Richard Greene, it is very unlikely we could ever get permission to conduct any such test on humans, and even animals might be difficult to get approval for such a burn test that would inflict harm and damage. I don’t personally feel comfortable burning rats or any other animal for such a test. I’m not a member of PETA, and I don’t in principle object to animal testing, but I personally wouldn’t do it myself and I would prefer that medical research make more efforts to avoid it where possible using, say, computer models for testing.

What would be helpful to me is if someone can tell me exactly what it is that Dr. Savage and Dr. Pronk can do. We need very specific definitions of what constitutes a “healing” and over what time frame. Wounds naturally heal anyway. Let’s say a cigarette burn normally heals in 10 days. What is it that Dr. Savage and Dr. Pronk can do? Can they heal it in 9 days? 8? 1? Five minutes? And what does this healing look like? Does the skin just magically grow over the wound such that you can’t even see any scarring? And over what time frame? Again, the problem is that people vary a lot in such conditions. For example, one person perhaps heals from a cigarette burn in 6 days, someone else in 15 days, with a general population average of 10 days. So what if the person Dr. Savage happened to heal was one of those who heals in 6 days, and he then claims to have done the healing in 6 days when in fact he did not. Does that make sense? You see the problem here, right?

Finally, although, again, I can sense in the passion of your words that you believe the claims of Dr. Savage, please be aware that there are thousands of people just like him all over the world making equally bold claims about healing cancer, AIDS, paralysis, weight loss, depression, and the like. Not one has ever been able to prove their claims under controlled conditions such as those I’ve outlined above. Not one. Ever. So what’s more likely? That Dr. Savage is the first person in history to actually be the real deal, or that he’s just like the thousands of others making such claims? For those who know him, such as yourself, the answer is likely to be “yes, he’s the one, the only one, ever, and how fortunate that we get to live at the same time as him and know him.” But to the rest of us on the outside who don’t know him, his claims are indistinguishable from the thousands of others just like him making similarly extraordinary claims.

If anyone reading this blog has an idea of how we can test Dr. Pronk and Dr. Savage in some controlled manner beyond what I’ve described herewith and that would not violate ethical standards outlined by ethics committees that regulate the ethical treatment of experimental subjects I would be appreciative of your thoughts on the matter.